hi
Mum has had frontal lobe mixed alzheimer's for approx 10 yrs. Cared for at home up until Jan this Yr when she collapsed with bi lateral aspirating pneumonia. Admitted to hospital after cpr basically, and after 26 days and 2 courses of antibiotics kicked out of hospital into an assessment bed. Shes double incontinent has been for 3 yrs, total immobile, totally non verbal, has a choking issue but still eating although slowly and not much, resists liquid intake. The day before discharge she self withdrew a foley catheter with the balloon still fully inflated, which they didn't tell the care home and immediately reinserted a new one as she obviously had damaged herself and couldn't urinate.
In the first 2 weeks in the home she had an external infection from catheter, which then progressed to a UTI , and more antibiotics, which was actually her 4th course in 13 weeks. She then ripped another catheter out, this time they left it out. She has a sacrum pressure sore, has to be full body hoist/ 3 person lifted or moved.
The NHS chc 2 weeks ago found her not eligible even though they acknowledged all the above and the fact she's been assessed as have no cognitive or communication ability independently.
I have asked that she is registered on the GP list as end of life because I want to discuss her medical treatment. As I know ( sorry alot of you wont get this) she would basically say kill me if she could. I need to make sure my and her wishes in that from now on no aggressive medical intervention happens if she gets sick etc and basically as long as she's pain free they stop keep trying to keep her alive...if you can call this a life, which I don't, and I know she would be disgusted about.
I am getting blanked when I ask for her to be registered as end of life, to open up treatment discussions hospice care and many things which can help in this final few months of her journey.
personally I think this is because then they'd have to pay. So they are denying her stage of illness to save their f*kking cheque book, which is sick!
How do I force them to admit that she ticks every box on their end of life palliative care list even on the nhs own website site. Im so annoyed they are downgrading her agony to save themselves cash. I hope they all end up with the same as she has tbh.
Mum has had frontal lobe mixed alzheimer's for approx 10 yrs. Cared for at home up until Jan this Yr when she collapsed with bi lateral aspirating pneumonia. Admitted to hospital after cpr basically, and after 26 days and 2 courses of antibiotics kicked out of hospital into an assessment bed. Shes double incontinent has been for 3 yrs, total immobile, totally non verbal, has a choking issue but still eating although slowly and not much, resists liquid intake. The day before discharge she self withdrew a foley catheter with the balloon still fully inflated, which they didn't tell the care home and immediately reinserted a new one as she obviously had damaged herself and couldn't urinate.
In the first 2 weeks in the home she had an external infection from catheter, which then progressed to a UTI , and more antibiotics, which was actually her 4th course in 13 weeks. She then ripped another catheter out, this time they left it out. She has a sacrum pressure sore, has to be full body hoist/ 3 person lifted or moved.
The NHS chc 2 weeks ago found her not eligible even though they acknowledged all the above and the fact she's been assessed as have no cognitive or communication ability independently.
I have asked that she is registered on the GP list as end of life because I want to discuss her medical treatment. As I know ( sorry alot of you wont get this) she would basically say kill me if she could. I need to make sure my and her wishes in that from now on no aggressive medical intervention happens if she gets sick etc and basically as long as she's pain free they stop keep trying to keep her alive...if you can call this a life, which I don't, and I know she would be disgusted about.
I am getting blanked when I ask for her to be registered as end of life, to open up treatment discussions hospice care and many things which can help in this final few months of her journey.
personally I think this is because then they'd have to pay. So they are denying her stage of illness to save their f*kking cheque book, which is sick!
How do I force them to admit that she ticks every box on their end of life palliative care list even on the nhs own website site. Im so annoyed they are downgrading her agony to save themselves cash. I hope they all end up with the same as she has tbh.